Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Topical how- swallowed flovent?

My child has EoE and used swallowed flovent for years and it never really controlled the EoE. Just moved to a new gastroenterologist who recommended replacing the swallowed flovent with high dose of omeprazole (40mg twice a day). After reading your posts I’m now concerned if that was not a good switch.

You could ask about other swallowed topical steroids. That seems like it might make more sense than PPIs since most people with EOE have had doctors prescribe ppis for years with no improvement. But in the unlikely chance he’s never taken omeprazole that’s probably worth a shot.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Dupixent is next up if those don’t work enough. But it’s been awful before he got diagnosed—3 cases of aspiration pneumonia plus vitamin deficiency, weight loss, and fear of food/eating.

Is dupixent the newly approved injectable for EoE? I’m the poster above and my (adult) child’s allergist and gastro both said it isn’t getting covered by their patients’ insurances yet. Curious if you looked into it?

Budesonide, it’s a liquid. But dupixent is on caremarks specialty pharmacy list for GEHA. So I assume it will be like anything else on their list—have to fail through a couple different treatments and get denied a couple times then get approved. That’s what’s happened for us with other super high cost biologics on that list.

https://www.caremark.com/portal/asset/cvs_specialty_vD.pdf

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Dupixent is next up if those don’t work enough. But it’s been awful before he got diagnosed—3 cases of aspiration pneumonia plus vitamin deficiency, weight loss, and fear of food/eating.

Is dupixent the newly approved injectable for EoE? I’m the poster above and my (adult) child’s allergist and gastro both said it isn’t getting covered by their patients’ insurances yet. Curious if you looked into it?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Topical how- swallowed flovent?

My child has EoE and used swallowed flovent for years and it never really controlled the EoE. Just moved to a new gastroenterologist who recommended replacing the swallowed flovent with high dose of omeprazole (40mg twice a day). After reading your posts I’m now concerned if that was not a good switch.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Dupixent is next up if those don’t work enough. But it’s been awful before he got diagnosed—3 cases of aspiration pneumonia plus vitamin deficiency, weight loss, and fear of food/eating.

Anonymous wrote:

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

A procedure to inflate the esophagus (during endo) and topical steroids

Anonymous wrote:Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

What did work for him?

Eosinophilic esophagitis

https://www.hopkinsmedicine.org/health/conditions-and-diseases/eosinophilic-esophagitis#:~:text=Eosinophilic%20esophagitis%20is%20an%20allergic,in%20reaction%20to%20an%20allergen.

What’s EoE?

Not sure this is your issue, but my spouse had severe EoE that was misdiagnosed for years as reflux. One clue his doctor picked up on is that he had no burning/acid taste with burping (so stomach acid wasn’t getting into the esophagus). This also meant that PPIs did nothing.

I followed Dr. Jamie Koufman's plan - did the hardcore acid-free diet, took Pepcid, not Nexium, drank alkaline water (still drink it), used the UK version of Gaviscon as recommended, etc. I started in August, and my symptoms have now almost completely resolved, with an occasional flare (like after champagne on NYE). I still take 10mg Pepcid before dinner and the Gavison before bed.

https://jamiekoufman.com/

There's also groups on FB and helpful Reddit threads - I got more help there than from my doctors.

https://www.facebook.com/DrJamieKoufman

https://www.facebook.com/groups/778441673829780

reviving this thread. I have had GERD for a long time but now I developed chest pain, burning with swallowing. I need to burp all the time after I swallow. Doctor prescribed omeprazone and maalox. how long does it take to heal it?

How does it cause nasal drip? I’m curious, because I have mucus in my throat 365 days a year (though no pain).

I don’t know if this applies to you or not, but the most striking thing that really helped me was losing weight. I wasn’t heavy by any means, like 10-15 lbs from “skinny”, but I lost about 7 pounds and really really surprised myself by finding that it helped my reflux more than any medicine, supplement, changes to diet, anything else I had tried. SMH that it took me so long and surprised me so much.

Anyone have reflux esophagitis? How have you managed it? My symptoms are chronic sore throat, sore chest and post nasal drip. 40 mg of famotidine 2x a day isn’t helping. Did a strict acid reducing diet help?